Expert Advisory Committee Research Articles

Learning from COVID-19: strengthening Australia's research capacity through preparedness and collaboration.

The coronavirus disease 2019 (COVID-19) pandemic has highlighted that preparedness for and responsiveness to pandemics requires public health platforms and processes which are nimble and evidence-based and a research ecosystem which is rapidly responsive to the evolving needs of society and decision-makers. The national BEAT COVID-19 research consortium was funded in 2020 by the Snow Medical Research Foundation (Snow Medical). Its Expert Advisory Committee met with the consortium post-pandemic to summarise the research undertaken and to consider lessons learned through the research response to COVID-19 in Australia. The panel observed that philanthropy offered an important 'kick-starter' funding mechanism for urgent research, which facilitated leveraging of additional funds. It further agreed that research requirements for strengthening Australia's pandemic preparedness and response include: (1) development of a national health and medical research strategy for pandemic research; (2) long-term investment in pre-established research partnerships and networks; (3) systemic procedural improvements, e.g. in ethics, governance and resource allocation; (4) responsive funding mechanisms including philanthropy; and (5) integration of research outputs into health practice and decision-making, as illustrated in Figure 1.

Surveillance for donor‐derived infections in Australia

AbstractBackgroundSystems for quality and safety assurance in organ donation and transplantation are vital, especially those that seek to minimize donor disease transmission. Australia has developed a national vigilance and surveillance system to identify, review, and analyze actual and potential donor‐derived infections and other disease transmissions.MethodsThe system involves notification of incidents to the Australian Organ and Tissue Authority for review by a Vigilance and Surveillance Expert Advisory Committee (VSEAC). The VSEAC grades incidents, O makes recommendations, and issues communications both publicly and to the clinical donation and transplant sector.ResultsAnnual notifications have increased since the inception of the system in 2012 until 2022. The vast majority relate to procedural aspects including donor assessment, information/data issues, and the recovery, offer, allocation, preservation and transportation of organs. Possible donor‐derived disease accounted for 19% of all notifications, and those related to possible donor‐derived infection only 12%. The VSEAC, as a result of reviewing these incidents, has made recommendations resulting in revisions to donor screening, organ allocation, packaging and transportation. The review of incidents has led to changes in clinical guidance for increased viral risk donor assessment, testing, and ensuing organ utilization and recipient surveillance. Guidance has also been reviewed for other infectious risks including strongyloides, human T‐lymphotropic virus, and HEV.ConclusionThe Australian vigilance and surveillance system has enabled national retrospective reporting and evaluation of serious adverse events or reactions to identify trends and inform processes and guidelines, therefore improving the safety of donation and transplantation. image

Developing, implementing, and evaluating the visiting Neighbors' program in rural Appalachia: A quality improvement protocol.

Older adults living alone in rural areas frequently experience health declines, social isolation, and limited access to services. To address these challenges, our medical academic university supported a quality improvement project for developing and evaluating the Visiting Neighbors program in two rural Appalachian counties. Our Visiting Neighbors program trained local volunteers to visit and guide rural older adults in healthy activities. These age-appropriate activities (Mingle, Manage, and Move- 3M's) were designed to improve the functional health of older adults. The program includes four in-home visits and four follow-up telephone calls across three months. The purpose of this paper was to describe the 3M's Visiting Neighbors protocol steps guiding the quality improvement procedures relating to program development, implementation, and evaluation. This Visiting Neighbors study used a single-group exploratory quality improvement design. This program was tested using quality improvement standards, including collecting participant questionnaires and visit observations. Older adults (> 65 years) living alone (N = 30) participants were female (79%) with a mean age of 82.96 (SD = 7.87) years. Volunteer visitor participants (N = 10) were older adult females. Two volunteer visitors implemented each visit, guided by the 3M's activities manual. All visits were verified as being consistently delivered (fidelity). Enrollment and retention data found the program was feasible to conduct. The older adult participants' total program helpfulness ratings (1 to 5) were high (M = 51.27, SD = 3.77). All volunteer visitor's program helpfulness ratings were also high (M = 51.78, SD = 3.73). The Visiting Neighbors program consistently engaged older Appalachian adults living alone in the 3M's activities. The feasibility and fidelity of the 3M's home visits were verified. The quality improvement processes included engaging the expert advisory committee and rural county stakeholders to ensure the quality of the program development, implementation, and evaluation.

Development of the Local Food Systems Policy Index (Local Food-EPI+) tool and assessment process to benchmark the implementation of local government policies for creating healthy, equitable and environmentally sustainable food systems.

Local governments have an important role to play in creating healthy, equitable and environmentally sustainable food systems. This study aimed to develop and pilot a tool and process for local governments in Australia to benchmark their policies for creating healthy, equitable and environmentally sustainable food systems. The Healthy Food Environment Policy Index (Food-EPI), developed in 2013 for national governments, was tailored to develop the Local Food Systems Policy Index (Local Food-EPI+) tool for local governments. To incorporate environmental sustainability and the local government context, this process involved a literature review and collaboration with an international and domestic expert advisory committee (n 35) and local government officials. Local governments. The tool consists of sixty-one indicators across ten food policy domains (weighted based on relative importance): leadership; governance; funding and resources; monitoring and intelligence; food production and supply chain; food promotion; food provision and retail in public facilities and spaces; supermarkets and food sources in the community; food waste reuse, redistribution and reduction; and support for communities. Pilot implementation of the tool in one local government demonstrated that the assessment process was feasible and likely to be helpful in guiding policy implementation. The Local Food-EPI+ tool and assessment process offer a comprehensive mechanism to assist local governments in benchmarking their actions to improve the healthiness, equity and environmental sustainability of food systems and prioritise action areas. Broad use of this tool will identify and promote leading practices, increase accountability for action and build capacity and collaborations.

유아교사의 디지털 리터러시 역량 모형 개발

Objectives This study aims to develop a model of digital literacy competencies for teachers in early childhood.
 Methods To this end, literature review, 3 rounds of delphi surveys were conducted. The research team and an expert advisory committee executed mutual validation at the end of each delphi survey to ensure objectivity and validity.
 Results As a result of this study, a digital literacy competency model for teachers in early childhood was derived, consisting of four main competencies and nine sub-competencies. The main competencies include digital cit-izenship consciousness, digital thinking competency, digital utilization and creation competency, and digital teaching competency. The sub-competencies for digital citizenship consciousness include compliance with digi-tal norms and digital responsibility consciousness, while sub-competencies for digital thinking competency in-clude digital critical thinking and problem-solving abilities. The sub-competencies for digital utilization and crea-tion competency include digital technology utilization and digital creation abilities. Finally, the sub-competencies for digital teaching competency include digital teaching design ability, digital teaching execution ability, and digital teaching reflection ability.
 Conclusions Based on the results of this study, it is expected that an education and training system can be estab-lished to cultivate digital literacy competencies that teachers in early childhood must possess in the educational field of the digital era.

OP107 Streamlining Health Technology Assessment Of Medical Devices Through Development Of The Philippine Essential Medical Device List

IntroductionPursuant to the Universal Health Care Act of 2019, the Health Technology Assessment Council (HTAC) in the Philippines was mandated to make recommendations for government financing of health technologies, including medical devices. The development of a Philippine Essential Medical Device List (PEMDL) will serve as a guide for the procurement of medical devices and supplies in government health facilities and as the basis for creating a price reference index.MethodsThe HTAC and a team of medical device experts (the Expert Advisory Committee) developed a streamlined pathway and guidelines using a Delphi technique with the Philippine Food and Drug Administration (FDA) and the Department of Health (DOH) to determine the necessary criteria for fast tracking the inclusion of medical devices. The pathway was also revised throughout a pilot processing of commonly procured medical devices (e.g., consumables) that were either already covered by existing national health insurance packages or funded by DOH programs, among others.ResultsThe final pathway consisted of validating whether the device was already approved by the Philippine FDA and whether it was already part of standard of care. Similar to the usual HTA nomination requirement, the local FDA approval attested to the safety and quality of the device. Meanwhile, the inclusion of the device in the standard of care guaranteed that it was essential in the healthcare setting. This can be written in the World Health Organization technical documents and databases such as the Medical Devices Information System, health facility listing requirements, or locally adopted clinical practice guidelines. The initial PEMDL for release contained a total of 307 medical devices across 16 categories.ConclusionsUnlike the mandate for the Philippine National Formulary, government health facilities are not yet required to base their procurement on the PEMDL because the list is still in its infancy. Moving forward, the list will include big ticket items and will be updated through consultations with specialty centers and hospitals.

Availability of family caregiver support in U.S. cancer centers.

218 Background: Family caregivers provide the majority of health care to the 18 million persons with cancer in the U.S. Yet despite providing complex medical and nursing care, a large proportion report no formal support or training. Recognizing this gap, many interventions to support cancer caregivers have been developed and tested over the past two decades and many have demonstrated effectiveness. However, there is little system-level data on whether U.S. cancer centers have adopted and implemented these interventions. We conducted the first national survey of Commission on Cancer (CoC)-accredited U.S. cancer centers to characterize the availability and types of family caregiver support programs. Methods: We conducted a mail and web-based survey of staff from CoC-accredited U.S. cancer centers regarding their family caregiver support programs (09/2021-03/2023). “Family caregiver programs” were defined as structured, planned, coordinated groups of activities and procedures aimed specifically at supporting family caregivers as part of usual care. Survey questions about 11 types of family caregiver programs (e.g., peer-mentoring, education classes, psychosocial programs) were developed after literature review, assessment of similar program evaluation surveys, and discussions among a 13-member national expert advisory committee. Results: Surveys were sent to potential respondents at 971 adult cancer centers and 238 were completed (response rate: 25%). Most cancer centers had at least 1 family caregiver program (178/238, 75.1%), which was most commonly “Information and Referral Services” (53.4%). Cancer centers with no programs were more likely to have smaller annual outpatient volumes (p<.05). Few centers had caregiver programs on: training in medical and/or nursing tasks (21.8%), caregiver self-care (20.3%), caregiver-specific distress screening (19.3%), peer mentoring (18.5%), and minor children caregiving for a parent (8.4%). Very few programs were developed from published evidence in a journal (7.9%). The top reason why cancer centers chose their programs was community members requesting the program (26.5%); only 11.8% chose their programs based on scientific evidence. Most programs were funded by the cancer center or hospital (58.0%) or by philanthropy (42.4%). Conclusions: While most U.S. cancer centers had some family caregiver programs, a quarter had none. Furthermore, the scope of programming was limited and rarely evidence-based, with few centers offering caregiver education and training. Implementation strategies are critically needed to foster uptake of evidence-based caregiver interventions.

Implementing patient-centred outcome measures in palliative care clinical practice for adults (IMPCOM): Protocol for an update systematic review of facilitators and barriers.

Background: Despite the development of patient-centred or patient-reported outcome measures (PCOMs or PROMs) in palliative and end-of-life care over recent years, their routine use in practice faces continuing challenges. Objective: To update a highly cited literature review, identify and synthesise new evidence on facilitators, barriers, lessons learned, PCOMs used, models of implementation, implementation outcomes, costs, and consequences of implementing PCOMs in palliative care clinical practice. Methods: We will search MEDLINE, PsycINFO, CINAHL, Embase, Emcare, SCI-Expanded, SSCI, ESCI, and BNI. The database search will be supplemented by a list of studies from the expert advisory committee, hand-searching of reference lists for included articles, and citations of the original review. We will include primary studies using a PCOM during clinical care of adult patients with advanced disease in palliative care settings and extract data on reported models of implementation, PCOMs, facilitators, barriers, lessons learned, costs, and implementation outcomes. Gough's Weight of Evidence Framework will be used to assess the robustness and relevance of the studies. We will narratively synthesise and tabulate the findings. This review will follow PRISMA, PRISMA-Abstract, PRISMA-P, and PRISMA-Search as the reporting guidelines. Source of funding: Marie Curie. The funder is not involved in designing or conducting this study. Protocol registration: CRD42023398653 (13/02/2023).

Availability of Family Caregiver Programs in US Cancer Centers

Family caregivers provide the majority of health care to the 18 million patients with cancer in the US. Yet despite providing complex medical and nursing care, a large proportion of caregivers report no formal support or training. In recognition of this gap, many interventions to support cancer caregivers have been developed and tested over the past 2 decades. However, there are few system-level data on whether US cancer centers have adopted and implemented these interventions. To describe and characterize the availability of family caregiver support programs in US cancer centers. This cross-sectional national survey study was conducted between September 1, 2021, and April 30, 2023. Participants comprised clinical and administrative staff of Commission on Cancer-accredited US cancer centers. Data analysis was performed in May and June 2023. Survey questions about the availability of 11 types of family caregiver programs (eg, peer mentoring, education classes, and psychosocial programs) were developed after literature review, assessment of similar program evaluation surveys, and discussions among a 13-member national expert advisory committee. Family caregiver programs were defined as structured, planned, and coordinated groups of activities and procedures aimed at specifically supporting family caregivers as part of usual care. Survey responses were tabulated using standard descriptive statistics, including means, proportions, and frequencies. Of the surveys sent to potential respondents at 971 adult cancer centers, 238 were completed (response rate, 24.5%). After nonresponse weight adjustment, most cancer centers (75.4%) had at least 1 family caregiver program; 24.6% had none. The most common program type was information and referral services (53.6%). Cancer centers with no programs were more likely to have smaller annual outpatient volumes (χ2 = 11.10; P = .011). Few centers had caregiver programs on training in medical and/or nursing tasks (21.7%), caregiver self-care (20.2%), caregiver-specific distress screening (19.3%), peer mentoring (18.9%), and children caregiving for parents (8.3%). Very few programs were developed from published evidence in a journal (8.1%). The top reason why cancer centers selected their programs was community members requesting the program (26.3%); only 12.3% of centers selected their programs based on scientific evidence. Most programs were funded by the cancer center or hospital (58.6%) or by philanthropy (42.4%). In this survey study, most cancer centers had family caregiver programs; however, a quarter had none. Furthermore, the scope of programming was limited and rarely evidence based, with few centers offering caregiving education and training. These findings suggest that implementation strategies are critically needed to foster uptake of evidence-based caregiver interventions.

Identifying Key Barriers for Radiation Oncology Financial Advocacy Programs

Financial toxicity is a devastating outcome for patients with cancer and can impact their treatment adherence and health outcomes. One survey reveals that most radiation oncologists are "very concerned" with the negative impact treatment-related costs have on patients, and another survey found that more than 20 percent of patients experience financial toxicity related to their radiation therapy treatment. Financial advocates within cancer programs and practices can help mitigate patients' financial toxicity by supporting shared decision-making and helping with treatment cost planning. In 2022, ACCC set out to explore how financial advocates in radiation oncology provide financial navigation to patients with cancer and address the challenges they may face. Identify barriers to financial toxicity mitigation and treatment access challenges for patients with cancer undergoing radiation therapy. ACCC worked with an expert multidisciplinary Financial Advocacy Network Advisory Committee to conduct two, semi-structured discussion sessions on financial advocacy in radiation oncology. Prepared discussion topics included challenges and opportunities in delivering financial advocacy services, financial barriers to care and strategies to mitigate financial toxicity, and processes for prior authorizations and claim denials in the radiation oncology setting. Twenty-one participants attended the first session, and 17 participants attended the second session. Participants included financial navigators and counselors, oncology social workers, nurse navigators, and cancer program or practice administrators. Three major challenges emerged from both sessions: (1) Inadequate financial assistance from independent, charitable foundations to help pay for patients' deductibles, additional radiation treatment out-of-pocket costs, and care-related transportation costs. (2) Lack of best practices to handle prior authorization and avoid denials. (3) Lack of preparedness for changes imposed by the Radiation Oncology (RO) Model, which would impact care planning. Many cancer programs and practices have implemented financial advocacy services but remain restricted in the available assistance for radiation therapy patients. Radiation therapy represents a significant component of anti-cancer treatment and addressing the lack of financial support for patients is critical to improving patients' treatment adherence and health outcomes. Payment policies must be reformed to address complex prior authorization requirements and patients would benefit from greater financial support for radiation treatment and costs of wrap-around supportive services.

Purpose, focus and voice? Lessons from a curriculum development advisory committee

ABSTRACT The curriculum development process is complex and developing a worthwhile process to support curriculum inception is a valuable endeavour. This paper explores the experiences of the curriculum development process through the lens of an expert advisory committee charged with developing a post-primary curriculum for publicly managed schools in line with their ethos and the national lower post-primary curriculum. The research employed semi-structured interviews with a group of curriculum developers (n = 10) involved in this curriculum development process. Following thematic analysis, four primary themes were identified: Purpose of the Advisory Committee, Focus of the Curriculum Expression, Balance of Voice, and the Role of the Curriculum Lead. These themes offer insights into the complexities of the curriculum development process including the importance of focusing, not just on the teacher’s voice, but also on the conditions that support teachers to engage fully with such processes. The findings also highlight the importance of embracing strategic leadership and democratic practices throughout this process and how the perceived focus of curriculum needs to be explicitly considered so as to unearth hidden assumptions of the curriculum developers. This study contributes to the broader understanding of how curriculum development can be enhanced to meet the needs of diverse stakeholders.

Understanding communication incommunity engagement formaternal andnewborn health programmes inlow- andmiddle-income countries: a realist review.

As community engagement (CE) is implemented for sustainable maternal and newborn health (MNH) programming, it is important to determine how these approaches work. Low- and middle-income countries (LMICs) have become a particular focus for MNH CE activities due to their high burden of maternal and neonatal deaths. MNH messaging and communication to engage communities are likely to differ by context, but how these approaches are actually developed and implemented within CE is not well understood. Understanding how communications in CE actually work is vital in the translation of learnings across programmes and to inform future projects. The purpose of this realist review is to describe how, why, to what extent and for whom communications in CE contribute to MNH programming in LMICs. After searching academic databases, grey literature and literature suggested by the expert advisory committee, documents were included if they described the CE communication processes/activities used for MNH programming in an LMIC. Relevant documents were assessed for richness (depth of insight) and rigor (trustworthiness and coherence of data/theories). Data were extracted as context-mechanism-outcome configurations (CMOCs) and synthesized into demi-regularities to contribute to theory refinement. After screening 416 records, 45 CMOCs were extracted from 11 documents. This informed five programme theories explaining that communications in CE for an MNH programme work when: communities are actively involved throughout the programme, the messaging and programme are acceptable, communication sources are trusted, the community has a reciprocal relationship with the programme and the community sees value in the programme. While these findings reflect what is often anecdotally known in CE or acknowledged in communications theory, they have implications for policy, practice and research by highlighting the importance of centring the community's needs and priorities throughout the stages of developing and implementing communications for CE in MNH.

Use of a mixed-methods approach to develop a guidebook with messaging to encourage colorectal cancer screening among Black individuals 45 and older.

Colorectal cancer (CRC) is the second leading cause of cancer-related deaths in the United States and disproportionately impacts Black individuals. Here, we describe the mixed-methods approach used to develop a tailored message guidebook to promote CRC screening among Black individuals in the setting of recently updated screening guidelines. This mixed-methods study included 10 in-depth qualitative interviews and 490 surveys in a nationally representative sample of unscreened Black individuals age ≥ 45. Messages were developed based on American Cancer Society (ACS) and National Colorectal Cancer Roundtable (NCCRT) research findings, tested among Black individuals using MaxDiff analytic methods, and reviewed by a multi-sector expert advisory committee of NCCRT members. The most frequently reported screening barrier in all age groups was self-reported procrastination (40.0% in age 45-49, 42.8% for age 50-54, 34.2% for age ≥ 55). Reasons for procrastination varied by age and included financial concerns, COVID-19 concerns, and fear of the test and bowel preparation. Additional screening barriers included lack of symptoms, provider recommendation, and family history of CRC. Most individuals age 45-49 preferred to receive screening information from a healthcare provider (57.5%); however, only 20% reported that a provider had initiated a screening conversation. We identified age-specific barriers to CRC screening and tailored messaging to motivate participation among unscreened Black people age ≥ 45. Findings informed the development of the NCCRT and ACS guidebook for organizations and institutions aiming to increase CRC screening participation in Black individuals.

An imbalanced approach to governance? An analysis of the WHO's position on human genome editing.

In 2021, the WHO Expert Advisory Committee on Developing Global Standards for Governance and Oversight of Human Genome Editing (the 'Committee') published its policy recommendations. It proposes, inter alia, a set of nine values and principles to inform the governance of human genome editing (HGE) and makes recommendations regarding how HGE can be regulated. While these proposals contain valuable contributions to the discourse on the global governance of HGE, they also contain elements that call for heightened attention to the risks of the technology, and a countervailing focus on the potential benefits of the technology is missing. The Committee ostensibly prioritises restricting HGE technology in the interest of society as a collective but, in doing so, neglects to consider the interests and rights of individuals. In this article, we suggest that this approach is imbalanced insofar as it fails to give sufficient weight to the promise of this technology in considering the regulation of risks and disregards the importance of the fundamental liberties underlying the use of HGE in its discussion of values and principles that should guide governance. How this is problematic is illustrated with reference to the Committee's openness to using patents as HGE governance tools and its blanket rejection of 'eugenics'. It is concluded that while the Committee makes some sensible recommendations on global governance, the Committee's approach of emphasising restrictions on HGE without also giving weight to the value of an open and liberal policy space is not something that liberal democratic states ought to follow.

Colorectal Cancer Clinical Trial Summit: Devising solutions and interventions.

e15603 Background: Only 5% of adult cancer patients enroll in cancer clinical trials; however, approximately 70% are willing to participate. The numerous gaps between patient willingness and trial participation rates suggest that enrollment in clinical trials can be challenging. The Colorectal Cancer Alliance Clinical Trial Think Tank Summit brought together multidisciplinary voices to propose solutions and tailor interventions to increase participation in colorectal cancer (CRC) clinical trials and save lives. Methods: An expert advisory committee supported the planning of the Summit by collating existing knowledge and best practices from across the field. The Alliance collected patient perspectives through interviews and aligned around three critical themes for change in CRC clinical trials. The Summit created a forum for thoughtful and strategic discussions with expert speakers and sessions to explore thematic solutions. Results: The advisory committee’s research activities and discussion identified strategic solutions across the following themes: 1. Marketing & Messaging Trust in Clinical Trials; 2. Fostering Readiness for Community-Based Cancer Research, and 3. Clinical Trial Patient Navigation. There was consensus that cancer patients and the public need to be educated on the importance of clinical trial access and dispel myths about clinical trials. Messaging must be culturally competent, creating quality standards for trial awareness and participation for utilization in a marketing campaign.  Summit participants discussed barriers to clinical trial enrollment at the institutional, structural, provider, and patient levels. Collaborations with industry sponsors and partnering with community oncology programs are necessary for designing and conducting research serving the understudied and underserved.   Participants identified that navigators are crucial for decentralized clinical trials and are a key element for improving clinical trial efficiency and the patient experience. Developing and launching a centralized clinical trial navigator pilot program is necessary to ensure that navigators are knowledgeable about recruiting CRC clinical trials nationally. Conclusions: Clinical trials are essential to advancing new treatments. To extend clinical research into the community, standardized messaging is needed that dispels myths about clinical trials and highlights positive trial outcomes. By improving our overall messaging, collaboration, education, and access to resources, we can accelerate CRC clinical trial participation to improve outcomes and research answers.

Differences in perceptions and use of remote patient monitoring technology in rural cancer programs.

1582 Background: While the benefits and acceptability of remote patient monitoring (RPM) during cancer care are well documented, barriers to implementation and use of these digital technologies remain. Feasibility may be particularly restricted in rural settings. The Association of Community Cancer Centers (ACCC) surveyed U.S. cancer programs, patients with cancer and caregivers in various geographic settings to illuminate the current practice landscape and perceptions regarding the use of digital technologies to monitor patients for adverse events and collect patient reported outcomes (PROs). Methods: ACCC convened an expert advisory committee and patient advocacy partners to guide development of two surveys, one for cancer program staff and the other for patients/caregivers. Surveys were distributed between December 2022 and January 2023 and included 25 closed and open-ended questions. Exploratory analysis was performed and responses were compared between rural, suburban, and urban settings for both groups, with comparisons made by two tailed Fisher’s exact test. Results: There were 128 cancer program staff and 162 patient/caregiver responses. Of staff respondents (52% physicians, 20% other clinicians, 21% administrators/managers), 58% work in urban, 30% suburban, and 13% rural settings. Of the patient/caregiver respondents (56% patients, 44% caregivers), 28% live in urban, 51% suburban, and 21% rural areas. 56% of rural, 24% of urban, and 26% of suburban respondents indicated that their cancer programs have not implemented and are not considering implementing RPM. Of rural program staff, 44% indicated they have no experience/familiarity with RPM, compared to 7% for urban and 13% for suburban staff (p<.001, p=.03, respectively). Fewer rural programs, as compared to urban, use secure text messaging (6% vs. 42%; p=.008) or automated phone surveys (6% vs. 34%; p=.03). More rural patients/caregivers compared to their urban/suburban counterparts indicated concerns about privacy (47% vs 27%; p=.02), concerns about the need to pay (44% vs. 19%; p=.004), and lack of strong cell service (5% vs 21%; p=.007) as barriers to RPM technology use. Conclusions: RPM is gaining momentum in academic and community cancer program settings; however, significant gaps exist in RPM experience and implementation for rural cancer programs. In addition to well-documented disparities in access to internet and cellular service for rural patients, perceptions about privacy and cost pose additional barriers. Secure text messaging and automated surveys are often used as example solutions to bridge digital literacy and access gaps, yet cancer programs in rural areas are less likely to use these technologies. Tailored patient/provider education, funding/reimbursement strategies, and advocacy for policies expanding technology infrastructure may be needed for cancer programs to equitably provide RPM technologies.

A Foundation for Patient-Centered Core Impact Sets: Key Learnings from Past and Existing Approaches.

Despite growing commitment to patient centricity, challenges persist in consistently identifying the impacts of disease and/or treatment that patients report as most important to them, especially across myriad potential downstream uses. Patient-centered core impact sets (PC-CIS), disease-specific lists of impacts that patients report as most important, are proposed as a solution. But, PC-CIS is a new concept, currently in the pilot stage with patient advocacy groups. We conducted an environmental scan to explore PC-CIS conceptual overlap with past/existing efforts [e.g., core outcomesets (COS)] and to inform general feasibility for further development and operationalization. With guidance and advice from an expert advisory committee, we conducted a search of the literature and relevant websites. Identified resources were reviewed for alignment with the PC-CIS definition, and key insights were gleaned. We identified 51 existing resources and five key insights: (1) no existing efforts identified meet the definition of PC-CIS as we have specified it in terms of patient centricity, (2) existing COS-development efforts are a valuable source of foundational resources for PC-CIS, (3) existing health-outcome taxonomies can be augmented with patient-prioritized impacts to create a comprehensive impact taxonomy, (4) current approaches/methods can inadvertently exclude patient priorities from core lists/sets and will need to be modified to protect the patient voice, and (5) there is need for clarity and transparency on how patients were engaged in individual past/existing efforts. PC-CIS is conceptually unique from past/existing efforts in its explicit emphasis on patient leadership and being patient driven. However, PC-CIS development can leverage many resources from the past/existing related work.

Miscarriage Australia: the use of a human centered design approach to design and develop a website for those affected by miscarriage.

Past research has shown that Australians affected by miscarriage want a website specific to both miscarriage and their local region that is accessible, comprehensive, evidence-based and informed by experts. The aim of this study was to design, develop and evaluate the Miscarriage Australia website using human centered design. A four stage human centered design approach was used to develop the Miscarriage Australia website which aimed to: (1) Understand the issue and why users need a website; (2) Define users' specific needs; (3) Design solutions to meet those needs; and (4) Evaluate the design by testing with end users. Across the four stages, various types of data and data analysis were developed and utilized including interviews, desktop research, development of personas and tone of voice, followed by usability testing. Process and content were guided by designers, developers and an expert advisory committee of key stakeholders. Analysis and synthesis of user research across Stages 1 and Stage 2 found 11 key themes pertaining to user's miscarriage experiences and support needs. Using the themes, common experiences, goals, motivations and behaviors of users were identified and similar user types grouped and used to inform the development of two personas. Using the personas and user research findings, design elements (Stage 3) including the "tone of voice guidelines" were developed recommending the Miscarriage Australia website be calm, empathetic, hopeful and authoritative. The tone of voice guidelines guided branding and over 100 pages of content was informed by the research team and reviewed by a 13-member Expert Clinical Advisory Committee over two rounds to ensure it was evidence based and reflected best practice. Using a contextual inquiry approach, usability testing was undertaken with 8 end users to test a low fidelity mockup and high-fidelity prototype of the website. Overall, end users reported the website was highly acceptable in terms of the design, content, layout, language and terminology, describing it in line with the intended tone of voice. Users reported the website was easy to use and navigate and provided useful and appropriate content and resources. Minor areas for improvement included slight changes to specific images, improved links for navigating sections, and a title change to one section heading. The Miscarriage Australia website was successfully implemented and commended by users as meeting their needs. As a result of using human centered design, the Miscarriage Australia website provides an ideal template or blueprint on how to develop a successful and useful digital resource for users, particularly around sensitive women's health issues.

Occupational Hand Dermatitis in Health Care: Development and Evaluation of an Online Training E-Module.

Background: Occupational hand dermatitis (OHD) is an important health concern for health care workers (HCWs), yet there is a lack of accessible training materials on this topic. Objectives: The objective of this study was to develop and evaluate an OHD training e-module for HCWs. Methods: The e-module was created in collaboration with an expert advisory committee and tested by Ontario HCWs through pre- and post-training OHD knowledge tests, a usability survey, and a survey about intent to change work skin care practices. Analyses of survey results included means and paired t-tests. Results: The 10-minute OHD training e-module for HCWs was tested by 254 HCWs and found to be highly usable, to increase OHD knowledge immediately and sustainably, and to change workplace skin care practices. Average OHD knowledge test scores significantly improved by 19% between the pretest (64.50%) and post-test (83.50%). Most 6-month follow-up survey respondents reported changing their skin care work practices (76.69%). Conclusions: This research addresses the previous lack of accessible OHD training for workers in health care settings. The creation and evaluation of a no-cost accessible OHD training e-module for workers in health care settings showed promising results across knowledge increase, knowledge retention, skin care behavior changes, and usability.

Vaccine-induced immune thrombotic thrombocytopenia post dose 2 ChAdOx1 nCoV19 vaccination: Less severe but remains a problem.

Vaccine-induced immune thrombotic thrombocytopenia (VITT) is a rare but established complication of 1st dose ChAdOx1 nCoV19 vaccination (AZD1222), however this complication after dose 2 remains controversial. To describe the clinicopathological features of confirmed cases of VITT post dose 2 AZD1222 vaccination in Australia, and to compare this cohort to confirmed cases of VITT post 1st dose. Sequential cases of clinically suspected VITT (thrombocytopenia, D-Dimer>5x upper limit normal and thrombosis) within 4-42days of dose 2 AZD1222 referred to Australia's centralised testing centre underwent platelet activation confirmatory testing in keeping with the national diagnostic algorithm. Final classification was assigned after adjudication by an expert advisory committee. Descriptive statistics were performed on this cohort and comparative analyses carried out on confirmed cases of VITT after 1st and 2nd dose AZD1222. Of 62 patients referred, 15 demonstrated presence of antibody mediated platelet activation consistent with VITT after dose 2 AZD1222. Four were immunoassay positive. Median time to presentation was 13days (range 1-53) platelet count 116x10^9/L (range 63-139) and D-dimer elevation 14.5xULN (IQR 11, 26). Two fatalities occurred. In each, the dosing interval was less than 30days. In comparison to 1st dose, dose 2 cases were more likely to be male (OR 4.6, 95% CI 1.3-15.8, p=0.03), present with higher platelet counts (p=0.05), lower D-Dimer (p=01) and less likely to have unusual site thromboses (OR 0.14, 95% CI 0.04-0.28, p=0.02). VITT is a complication of dose 2 AZD1222 vaccination. Whilst clinicopathological features are less severe, fatalities occurred in patients with concomitant factors.